I went into this weekend as usual, with plans and optimism, thinking I didn’t feel too badly thoughout the week, so the weekend was going to be amazing -- productive, funtional, fun. And pretty quickly, as usual, I vaguely recall, because I don’t seem to remember this phenomena from week to week, I’m flat on my back. Weak, nauseaus, upset stomach and crazy dizzy when I stand up. I almost turned around on the way back from getting my shot at the hospital to return, but I just couldn’t bear the E.R., not fond of my disappointment and fear, but I’m stuck with at least those.
I feel just horrible, I guess this chemo really hits me a few day later and not immediately, like the first regimen did, and with my chemo brain, I can’t seem to keep track of that week to week. It’s 5p.m. and I’m finally out of bed and cooking pasta, but I have to keep sitting down as the room spins. My brain feels like it might as well be living in a jar on a shelf, because I just can’t seem to get anywhere.
Only fun thing today is hearing the serious newscasters say "pussy riot".
Saturday, August 18, 2012
Friday, August 17, 2012
Shiny, Pretty
I’m dreaming of Toyotas, shiny, pretty Toyota RAV4s. After weeks of pouring over auto websites and viewing and reviewing the specs and the galleries, the darkhorse Toyota, originally not considered due to preconceived fear of price, dashed up and stole my heart. I don’t know what the specs and ameneties are, I don’t know the gas mileage, I just know I like the dashboard design, it has round air vents, I like round and I like it’s shape. I think it’s the smartest looking of the vehicles I've been pondering so I’ve decided not to obsess, not to spend weeks test driving five different brand cars, I’m just gonna go hunt me down a sweet little Toyota. I loved the Corolla I had years ago, so that’s that. Somewhere out there is a fabulous deal on a RAV4, I just know it.
I had the worst insomnia last night, it’s just getting worse and worse. Popped two Vicodin’s and still couldn’t sleep for more than 45 minutes at a time. Maybe it was the chemical cake bomb I ate, maybe there was a chemical conflict when it encountered all the chemicals already swimming around inside me. When I’m finally done with my five days per week at the clinic, I can spend some time having acupuncture and easing into exercise and hopefully that will help. Of course, before I know it, I’ll be at radiation five days a week, cancer is time consuming.
Now that I’m done with chemo, I’m anxious for hair sprouts. I wonder what it will be like to just blend in, look like everyone else. I wonder if it will be easier or harder when I look normal on the outside, but don’t feel normal on the inside. Maybe surreal is just going to be my new normal, in so many respects.
I had the worst insomnia last night, it’s just getting worse and worse. Popped two Vicodin’s and still couldn’t sleep for more than 45 minutes at a time. Maybe it was the chemical cake bomb I ate, maybe there was a chemical conflict when it encountered all the chemicals already swimming around inside me. When I’m finally done with my five days per week at the clinic, I can spend some time having acupuncture and easing into exercise and hopefully that will help. Of course, before I know it, I’ll be at radiation five days a week, cancer is time consuming.
Now that I’m done with chemo, I’m anxious for hair sprouts. I wonder what it will be like to just blend in, look like everyone else. I wonder if it will be easier or harder when I look normal on the outside, but don’t feel normal on the inside. Maybe surreal is just going to be my new normal, in so many respects.
Thursday, August 16, 2012
Cancer Cake & Pez Dispensers
I think Cumulative is the word of the week. I've been feeling really tired and druggy all week and sleeping poorly, getting confused, so that despite having had my last chemo, I don't feel celebratory. I've been doing chemo for so long now and still popping into the clinic every day for my shots that it just doesn't feel real yet. It will feel real when I'm feeling a little better, but for now, I'm just going through a normal chemo dose aftermath, complete with chipping a tooth on gum... gum!
I was trudging through the grocery store tonight at my snail's pace and I ran into someone I know peripherally and they said "you look like you're going to fall over" and I blurted out "status quo baby, that's the way I rolls." They wished me good luck and went on their way, but yay for me, I amused myself if no one else, I don't know where that response came from.
The tall one typed my grocery list into my phone for me and after he brought in the groceries and I put them away we settled into a taped Daily Show episode followed by a little Shark Week and I am so acutely aware of what a sanctuary my little family is, so grateful for my home, my cozy, safe haven. We may not be perfect, but we're always nice to each other, there's never any yelling, or ignoring, we're always chatting it up or just quietly enjoying each other's company. Even now as I'm typing, he'll rewind the good scenes and tell me when to look up to see a big shark jumping out of the water. Little one is sitting at the computer behind me playing his beloved MineCraft and on-line chatting with his friends doing the same and giggling to himself non-stop, but he joins in the conversation when he feels like it.
While I was at the store I had a craving for frozen cake, I've had this before but don't follow through. Tonight I gave in and bought a Pepperidge Farm Frozen Cake {with "decorative frosting"... as opposed to the non-decorative, utilitarian frosting?}, in other words, Cancer Cake, containing 0% real food, the kind of food I've sworn off. It was disgusting, so sweet, cardboard texture, I can't get the sickly, artificial taste out of my mouth, and it gave my such a headache. I'm glad I bought it though, because I'll never be tempted by that odd craving again, yuck. I also treated us to a Kermit the Frog Pez Dispenser, I can't resist a quality new Pez Dispenser, and while J is the Pezaholic, G and I loved Sesame Street, so Kermit rightfully joins our collection.
The boys are with their father this weekend and no kidnapping them back for me. I'm going to have a me, me, me weekend. Lot's of naps, porch time, a little studio time and I have a few choices of just plain enjoyable things I'd like to do, it remains to be seen whether I do any of them, but I need the wide open time. No sooner did I get back from last chemo than little boy spiked a fever and turns out to have the Coxsackie virus. Not dangerous, but sore throat and sores in his mouth, it's more serious if you're younger. He was so cute, "oh no, I can't have your delicious smoothies because the doctor said not to have any citrus and you put orange juice in." No worries, I can use apple.
I was trudging through the grocery store tonight at my snail's pace and I ran into someone I know peripherally and they said "you look like you're going to fall over" and I blurted out "status quo baby, that's the way I rolls." They wished me good luck and went on their way, but yay for me, I amused myself if no one else, I don't know where that response came from.
The tall one typed my grocery list into my phone for me and after he brought in the groceries and I put them away we settled into a taped Daily Show episode followed by a little Shark Week and I am so acutely aware of what a sanctuary my little family is, so grateful for my home, my cozy, safe haven. We may not be perfect, but we're always nice to each other, there's never any yelling, or ignoring, we're always chatting it up or just quietly enjoying each other's company. Even now as I'm typing, he'll rewind the good scenes and tell me when to look up to see a big shark jumping out of the water. Little one is sitting at the computer behind me playing his beloved MineCraft and on-line chatting with his friends doing the same and giggling to himself non-stop, but he joins in the conversation when he feels like it.
While I was at the store I had a craving for frozen cake, I've had this before but don't follow through. Tonight I gave in and bought a Pepperidge Farm Frozen Cake {with "decorative frosting"... as opposed to the non-decorative, utilitarian frosting?}, in other words, Cancer Cake, containing 0% real food, the kind of food I've sworn off. It was disgusting, so sweet, cardboard texture, I can't get the sickly, artificial taste out of my mouth, and it gave my such a headache. I'm glad I bought it though, because I'll never be tempted by that odd craving again, yuck. I also treated us to a Kermit the Frog Pez Dispenser, I can't resist a quality new Pez Dispenser, and while J is the Pezaholic, G and I loved Sesame Street, so Kermit rightfully joins our collection.
The boys are with their father this weekend and no kidnapping them back for me. I'm going to have a me, me, me weekend. Lot's of naps, porch time, a little studio time and I have a few choices of just plain enjoyable things I'd like to do, it remains to be seen whether I do any of them, but I need the wide open time. No sooner did I get back from last chemo than little boy spiked a fever and turns out to have the Coxsackie virus. Not dangerous, but sore throat and sores in his mouth, it's more serious if you're younger. He was so cute, "oh no, I can't have your delicious smoothies because the doctor said not to have any citrus and you put orange juice in." No worries, I can use apple.
Tuesday, August 14, 2012
F is for flunked
I flunked my CBC today and I'm not surprised because I've been feeling completely played out. I found a pile of jeans that didn't fit any more in my dresser and I decided to try some on and the mere act of pulling up and buttoning two pairs of pants left my arms aching and my lungs gasping for breathe, now that's just pathetic. Good news is that one pair fit and one was too big.
Because it was my last chemo, they let me do it even though my white blood cells are really low and would have normally disqualified me. I do, however, require at least another week of daily shots which I thought I was done with, and it may delay my surgery next week.
I had been hoping to be done well before school starts, so we could have some fun field trips, but it looks like it isn't going to go down that way.
Right now I can't focus on any of that, I'm consumed with little boy's 6th grade schedule and how we did not exactly win the teacher choice lottery. I'm hoping to drag my bad, bald self in there later in the week and beg, plead and cry at them. I've not wanted, or expected anyone's sympathy or special treatment, but I'm not holding back with this, I want what I want despite fierce school policy regarding swapping teachers. I'm normally a very low maintenance parent, but I'm not willing to just roll the dice here although ultimately, I may not have a choice. It really makes me wonder when I'm going to catch a break. I do, however, believe I was issued a "cancer card" upon diagnosis and I've refrained from using it until now, but I'm playing that baby and it may not be pretty.
Because it was my last chemo, they let me do it even though my white blood cells are really low and would have normally disqualified me. I do, however, require at least another week of daily shots which I thought I was done with, and it may delay my surgery next week.
I had been hoping to be done well before school starts, so we could have some fun field trips, but it looks like it isn't going to go down that way.
Right now I can't focus on any of that, I'm consumed with little boy's 6th grade schedule and how we did not exactly win the teacher choice lottery. I'm hoping to drag my bad, bald self in there later in the week and beg, plead and cry at them. I've not wanted, or expected anyone's sympathy or special treatment, but I'm not holding back with this, I want what I want despite fierce school policy regarding swapping teachers. I'm normally a very low maintenance parent, but I'm not willing to just roll the dice here although ultimately, I may not have a choice. It really makes me wonder when I'm going to catch a break. I do, however, believe I was issued a "cancer card" upon diagnosis and I've refrained from using it until now, but I'm playing that baby and it may not be pretty.
Sunday, August 12, 2012
Bad Alliteration
Romney is sickening and ridiculous, but Romney and Ryan is dangerous. Please let us be smarter than when we went to the polls and elected W, I’m scared and so damned sick of tall, white men wanting to tell everyone else what to do, and ultimately only serving themselves. And that is the perfect segue into local politics where I’d like to tell any local friends that I’m really excited to be avidly supporting Maryellen Butke for State Senate in District 3. You know me, I’ve done my research, and I am really impressed with Maryellen -- her years and years of work in public education reform, her commitment to getting gay marriage passed in Rhode Island and the knowledgeable {she has all the degrees you could possibly want} and human way she embodies a truly progressive point of view.
I’m thinking of having one of those meet and greet gatherings at my house for her, something I’ve never done or even attended, but it’s got to be soon, the primary is on Sept. 11. I’ve already said I would do it but I’m looking at my schedule of last chemo and surgery and I know I’m biting off more than I can chew, at the same time, it seems a really important thing to do as I think she’s going into this as a bit of an underdog, since Rhoda Perry hand-picked her replacement and she’s got all the powers that be behind her. So very sick and tired of not doing the things I want to do, I think I’m going to really suck it up and do this or I’ll hate myself.
I was at the grocery store yesterday and a woman came flying towards me with the biggest breasts, just wobbling out of her shirt and I thought to myself “nice ones” and that shocked even me. That is just not something I’m used to thinking, nice ones? Oh my god, and they were huge, i’ve never wanted huge breasts and still don’t, are they putting testosterone in my chemo drip? They really were more scary than nice, but there is my brain saying “nice ones”. This obsession with breasts isn’t maudlin, it’s just constant and weird and takes me by surprise over and over again. So if we’re having coffee together, yeah, I’m looking at your boobs, please don’t be uncomfortable, but do slap me if I try to touch them.
I’m thinking of having one of those meet and greet gatherings at my house for her, something I’ve never done or even attended, but it’s got to be soon, the primary is on Sept. 11. I’ve already said I would do it but I’m looking at my schedule of last chemo and surgery and I know I’m biting off more than I can chew, at the same time, it seems a really important thing to do as I think she’s going into this as a bit of an underdog, since Rhoda Perry hand-picked her replacement and she’s got all the powers that be behind her. So very sick and tired of not doing the things I want to do, I think I’m going to really suck it up and do this or I’ll hate myself.
I was at the grocery store yesterday and a woman came flying towards me with the biggest breasts, just wobbling out of her shirt and I thought to myself “nice ones” and that shocked even me. That is just not something I’m used to thinking, nice ones? Oh my god, and they were huge, i’ve never wanted huge breasts and still don’t, are they putting testosterone in my chemo drip? They really were more scary than nice, but there is my brain saying “nice ones”. This obsession with breasts isn’t maudlin, it’s just constant and weird and takes me by surprise over and over again. So if we’re having coffee together, yeah, I’m looking at your boobs, please don’t be uncomfortable, but do slap me if I try to touch them.
Friday, August 10, 2012
Premature
Awwww, last day of camp for little boy who couldn't tear himself away. Hugs, and more hugs, high fives, but mostly hugs, the kind where you smoosh your face into the other person. Everyone who darkens our doorstep is invited to his film festival which while fabulous is a bit long, patience has been well forthcoming. I don't think he's ever had such total, relentless, non-stop fun in his whole life, it's a beautiful thing when you find your tribe.
My thoughts today are with David Rakoff {mentioned in a previous post} who died last night at 47 years old when the cancer he'd been keeping at bay decided to get him. Writer, performer, very human being. Sad. Pointless. Premature. Unfair how much he went through. R.I.P. David Rakoff.
My thoughts today are with David Rakoff {mentioned in a previous post} who died last night at 47 years old when the cancer he'd been keeping at bay decided to get him. Writer, performer, very human being. Sad. Pointless. Premature. Unfair how much he went through. R.I.P. David Rakoff.
Thursday, August 9, 2012
Garbage Disposal
When I heard through the grapevine than my acquaintance, and son’s former 7th grade english teacher had breast cancer I felt disproportionately upset {redundant, I know, I’ve told this story}. I felt some inexplicable connection to this person I didn’t know well and I was utterly compelled to barge right into her life and be her friend and support her anyway I could, whether I was actually of any help, of course, could be debated. These things have no rhyme or reason and in this case I wound up with the better part of the deal because she’s been an amazing source of support for me as I now go through this appalling odyssey. Friends for life, I have no doubt.
Last week, my favorite of all household luxuries, the garbage disposal broke. Yes, I know they’re bad for the environment, I don’t care, I must have a garbage disposal, I could sooner live without a dishwasher, air conditioner, anything, so I called my plumber. He’s been my plumber for a decade {but how often do you see your plumber?} and a cantankerous old character, yes, anyone older than me gets called old, he’s not that old. Well, don’t judge a book by it’s cover. He’s a hunter and a fisherman and makes his own sausage, his own wine and it turns out, is a gourmet cook who likes to wear a chef's hat, who would have guessed? A man’s man who doesn’t like small children, he’d “drown them all” if he had the chance and now I learn he was a nurse, a medic in Vietnam. I don’t think you could find two people more seemingly different than {blank} the plumber and I. I’ve always called him {insert real name here} the plumber, but I’m leaving his name out as I leave everyone’s name out, so I’m referring to him here as blank-the-plumber. I have to admit, I’ve always had a soft spot for him and his cranky humor and we always joke around when he’s fixing my cranky old house pipes. And yeah, the guy who painted my house 10 years ago is now counted among my closest dearest friends. What can I say, I’m chatty and I think we outsider, self-employed folk are attracted to one another no matter how different we are.
The etiquette of cancer is tricky. I don’t like to shock people, but what do you say to someone you’re going to see who doesn’t know? When he called to say he was coming over to fix my disposal I blurted out -- don’t be shocked when you see me, I’ve been a little sick, I look a little different. He was confused so I said “o.k., I have cancer and I’m bald, but it’s fine, don’t worry about it, I just didn’t want you to be shocked when you saw me.”
Blank-the-plumber had the same response to me as I did to G's teacher, he was really, really affected. There is the deepest humanity and kindness where you least expect it. Blank is an oldest sibling with five younger sisters and he says now I’m sister #6. He called me the next day and said he talked to his wife about me and they’re all in, they really want to be there for me. Since then he’s dropped off vegetables from his garden twice and showed up yesterday with a shaved head. “when you grow hair, I’ll grow hair, it’s no big deal.” I’ve seen pictures of his cabin, his pets, his life and I can now tell you that Blank-the-plumber is my friend for life and I’m completely uplifted by the sweet amazing soul he covers up with all that faux crankiness.
The biggest of hearts lurk in the most unexpected places {as do the smallest}.
When something life changing like an illness or a loss hits your life, it’s guaranteed that your relationships will reorganize themselves, I’ve been there before and it’s not just me, anyone will tell you this who’s been there. The person you look to for support may be the first to flee, while your rock, your indispensible person might be who you least expected. I’ve been lucky this time around, I have gained so many amazing people and relationships on this trek. Encountered so much kindness and generosity, sincerity and strength. From the folks on my street I barely knew to the long ago friends who’ve popped up after 25 years. And next week, I’m having lunch with my plumber who is now my friend.
My only quandary is how to deal with the friends who’ve vanished. The folks I thought would be there and called once or twice early on and were gone, the “call me when you’re feeling better and we’ll have dinner.” Maybe I’ll never hear from them again which might be preferable. I don’t know how to answer, “how’s it going? what are you up to?” from someone who’s been incommunicado through all of this helter skelter madness, where would you begin? It’s not a matter of being mad, or holding grudges, that’s not me, it’s just really truly, where do you begin? I can’t imagine what I would say, how would I not feel alienated, estranged? I’m not the same person, you just can’t go through something this big and all encompassing and be the same person on the other end {of which there really isn’t one} and if someone hasn’t been vaguely tuned in to either real me or blog me, I just feel like they wouldn’t know me anymore. That’s why I’m so grateful to this blog and to everyone who reads it, skims it, stays tuned in even a little, because I will be able to see you a week or a year from now and not feel like an alien, not feel self-conscious, because you’ve stuck with me, you know where I’ve been and I am forever grateful to you for keeping me tethered.
Last week, my favorite of all household luxuries, the garbage disposal broke. Yes, I know they’re bad for the environment, I don’t care, I must have a garbage disposal, I could sooner live without a dishwasher, air conditioner, anything, so I called my plumber. He’s been my plumber for a decade {but how often do you see your plumber?} and a cantankerous old character, yes, anyone older than me gets called old, he’s not that old. Well, don’t judge a book by it’s cover. He’s a hunter and a fisherman and makes his own sausage, his own wine and it turns out, is a gourmet cook who likes to wear a chef's hat, who would have guessed? A man’s man who doesn’t like small children, he’d “drown them all” if he had the chance and now I learn he was a nurse, a medic in Vietnam. I don’t think you could find two people more seemingly different than {blank} the plumber and I. I’ve always called him {insert real name here} the plumber, but I’m leaving his name out as I leave everyone’s name out, so I’m referring to him here as blank-the-plumber. I have to admit, I’ve always had a soft spot for him and his cranky humor and we always joke around when he’s fixing my cranky old house pipes. And yeah, the guy who painted my house 10 years ago is now counted among my closest dearest friends. What can I say, I’m chatty and I think we outsider, self-employed folk are attracted to one another no matter how different we are.
The etiquette of cancer is tricky. I don’t like to shock people, but what do you say to someone you’re going to see who doesn’t know? When he called to say he was coming over to fix my disposal I blurted out -- don’t be shocked when you see me, I’ve been a little sick, I look a little different. He was confused so I said “o.k., I have cancer and I’m bald, but it’s fine, don’t worry about it, I just didn’t want you to be shocked when you saw me.”
Blank-the-plumber had the same response to me as I did to G's teacher, he was really, really affected. There is the deepest humanity and kindness where you least expect it. Blank is an oldest sibling with five younger sisters and he says now I’m sister #6. He called me the next day and said he talked to his wife about me and they’re all in, they really want to be there for me. Since then he’s dropped off vegetables from his garden twice and showed up yesterday with a shaved head. “when you grow hair, I’ll grow hair, it’s no big deal.” I’ve seen pictures of his cabin, his pets, his life and I can now tell you that Blank-the-plumber is my friend for life and I’m completely uplifted by the sweet amazing soul he covers up with all that faux crankiness.
The biggest of hearts lurk in the most unexpected places {as do the smallest}.
When something life changing like an illness or a loss hits your life, it’s guaranteed that your relationships will reorganize themselves, I’ve been there before and it’s not just me, anyone will tell you this who’s been there. The person you look to for support may be the first to flee, while your rock, your indispensible person might be who you least expected. I’ve been lucky this time around, I have gained so many amazing people and relationships on this trek. Encountered so much kindness and generosity, sincerity and strength. From the folks on my street I barely knew to the long ago friends who’ve popped up after 25 years. And next week, I’m having lunch with my plumber who is now my friend.
My only quandary is how to deal with the friends who’ve vanished. The folks I thought would be there and called once or twice early on and were gone, the “call me when you’re feeling better and we’ll have dinner.” Maybe I’ll never hear from them again which might be preferable. I don’t know how to answer, “how’s it going? what are you up to?” from someone who’s been incommunicado through all of this helter skelter madness, where would you begin? It’s not a matter of being mad, or holding grudges, that’s not me, it’s just really truly, where do you begin? I can’t imagine what I would say, how would I not feel alienated, estranged? I’m not the same person, you just can’t go through something this big and all encompassing and be the same person on the other end {of which there really isn’t one} and if someone hasn’t been vaguely tuned in to either real me or blog me, I just feel like they wouldn’t know me anymore. That’s why I’m so grateful to this blog and to everyone who reads it, skims it, stays tuned in even a little, because I will be able to see you a week or a year from now and not feel like an alien, not feel self-conscious, because you’ve stuck with me, you know where I’ve been and I am forever grateful to you for keeping me tethered.
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